Autism: so common, yet so misunderstood
Alison Exelby’s elder son Steven was diagnosed with ‘moderate’ autism when he was three and a half.
Now, at almost nine, he’s mainstreamed and doing ‘okay’ at school, because his teachers, both last year and this, understand the condition, recognise Steven’s behavioural indicators, and value ‘visuals’ in accommodating his special learning needs.
Like many people with autism, Steven is intelligent, inquisitive and focuses intensely on what he’s doing. Unlike many, whose frustrations are reflected in their antisocial behaviour, Steven usually withdraws into himself when he’s confused or frustrated.
Alison and Steven’s teacher have learned that sometimes when given pen and paper he will draw a picture to explain what has upset him. “We use this to find out what’s troubling him when he’s unwilling to talk. Once he has drawn the picture he seems able to tell me more. It’s great that we have found another way for him to communicate so we can understand him better.”
Alison recalls her son’s first 18 months, before she knew there was anything ‘wrong’. “He was screaming a lot and seemed frustrated as though he knew what he wanted but couldn’t make himself understood.”
Her grandmother suggested autism might be the cause and Steven’s progress started when his pre-school also recognised his condition and referred him to an early education psychology service – with a long waiting list.
When eventually Steven’s turn came, a light went on for the family as they were introduced to concepts and ideas that changed their way of thinking.
“We learned that he was a visual learner. And early intervention ideas like visuals workshops were a breath of fresh air,” reckons Alison. “They showed Steven a picture of food – say a banana – and then took his hand to touch a real banana. Then they taught him that if he wanted a banana to eat he needed to take the picture to me.” Alison recalls pictures blue-tacked all round the kitchen. “And it worked: Steven could communicate! Eventually he learned to say the words and we stop needing to use the visuals.”
Steven loves pictures and especially photographs of people and events he’s part of.
“He needs to see pictures that look like the real thing,” Alison says. “I had to explain to the pre-school teachers that there was no point drawing stick people as they meant nothing to Steven. That’s when they got the visuals that Steven could understand.”
While he had one-on-one support at pre-school Steven and his family still had to cope with the real world, which seemed filled with judgmental people.
“Because children with autism are not ‘visually impaired’ there will always be people who assume their behaviour is naughtiness, or simply the result of poor parenting,” comments Alison, adding, “But some are willing to ask you if you need help.”
Nowadays Steven is considered too ‘normal’ to qualify for Ongoing and Reviewable Resourcing Schemes (ORRS) funding. At first Alison was delighted to hear the description – until she realised Steven now gets little extra help just because his assessment level is too high.
“He can say the alphabet forwards and back, and count up to and down from 100 – but that doesn’t alter the fact it can be hard for his teacher to keep him on task,” she says. “Steven concentrates on what he likes doing to the point of blocking out everything else.”
Currently Steven gets a couple of hours of teacher aide time at school which is mainly used for story writing time as he finds that hard to do. Alison feels if there was more teacher aide time for him he would be able to cope better. “How can you expect a classroom teacher to coax the best out of children with special needs like Steven’s when he has 25 other children to teach too?” she asks with feeling.
Alison has to juggle Steven’s needs with those of her younger son. Last term Steven started ‘after school kids club’ so that she could share one-on-one 'normal' time with Liam. “Liam has had to grow up fast and cope with a lot. Most of the time he adjusts to playing games the way Steven wants to play them.”
That’s because, besides learning difficulties, Steven has limited social skills – and his own addictions.
“Anything tidily in its place seems to delight him,” Alison explains. She has many photos of Steven with items lined up, re-arranged in diverse shapes and blended colours – all evidence of Steven’s passion for orderliness and his love of numbers and letters. “He’s meticulous about re-arranging things, he makes repetitive noises which his teacher and classmates have learned to ignore, and he has a phobic hand action, a kind of lateral wave, which indicates he’s stressed.”
Anything that breaks into Steven’s routine can cause a change in his behaviour.
“We recently moved, which Steven found to be stressful, but in the week before I was able to take him over to the new house daily to help him see where we were going to live. We took paper over and drew his room and then he drew where he wanted his furniture to go. Knowing what was going to happen and when was very reassuring for him.”
Just as Alison’s learning new ways of assisting Steven, she suggests there’s much the general public could learn about autism too.
She applauds Steven’s school: “They ran a mufti day to raise money for autism awareness,” she says. “And the school office has a DVD that families can borrow to learn more about autism.”
But generally, she believes, people are scared of the situation and don’t know how to cope.
Her advice: “If you know of a child who has been diagnosed with autism, get books out of the library and search the internet for information, and spend time with the parent and child so you can watch and see. Don’t just label the child. And don’t condemn the parents. They need more help, not criticism.”
